Four-year-old Victoria Yenzer knows she is different from other children her age. As a victim of a little known muscle disease, Spinal Muscular Atrophy (SMA), the wheelchair-bound Farmingdale resident cannot perform such basic functions as opening doors and lifting herself up. As she explains it to her little friends, her muscles are weak, because she was born that way.
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Farmingdale resident Victoria Yenzer, shown here with her father Doug, and dog Winnie is among the many children diagnosed with Spinal Muscular Atrophy (SMA). In an effort to support research for a cure for the disease, the Farmingdale Fire Department will take on News Channel 12 and Keyspan Energy Corporation employees in a softball fund raiser for the Families of SMA.
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On Aug. 26, some members of the local community will try to give Victoria, and others diagnosed with SMA, a fighting chance for a cure, when the Farmingdale Fire Department takes on News Channel 12 and Keyspan Energy Corporation employees in a softball fund raiser.
The charity event will benefit the Families of SMA, a non-profit organization of parents of children diagnosed with the disease who raise money for research in hopes for a treatment and cure. The group's efforts so far have aided in the 1990 discovery of the chromosome which houses the SMA gene, of the finding of the gene itself, and testing for SMA. However, there is not yet any drug, surgery, or therapy for the affliction.
Victoria Yenzer's mother, Rosemary, is among the volunteer members of the Families of SMA, and is helping to organize the charity softball event. "My hope is that they can find a treatment or a cure as soon as possible to benefit my daughter," she said.
According to Yenzer, in addition to raising funds for research, the Families of SMA is aiming to increase public awareness about the disease. She noted that 1 in 40 people are carriers of the SMA gene, and that in order for a child to inherit the disease, both parents must be carriers.
SMA, which occurs mostly in children, and rarely in adults, is an inherited disease of the anterior horn cells, located in the spinal cord, which affect the voluntary muscles for activities such as crawling, walking, head and neck control and swallowing. SMA mainly impairs muscles closest to the trunk of one's body, with weakness in the legs generally greater than weakness in the arms, rendering a wheelchair necessary for many patients. Some abnormal movements of the tongue, called tongue fasciculations, may be present in some patients. However, the senses and feelings, as well as intellect, are normal. In fact, it is often observed that patients with SMA are unusually bright and sociable. This relatively obscure disease is sometimes fatal, with death caused by respiratory complications brought on by the deterioration of the patient's muscle tissue.
The softball game to benefit the Families of SMA will be played at 7 p.m. at the Plainview/Old Bethpage Park on Washington Avenue in Plainview. The event will feature live raffles and auctions.
Members of the local community who wish to support the Families of SMA may do so by coming down to the softball game, or by sending donations to the organization's New York chapter at: P.O. Box 1182, West Babylon, New York, 11704, or national headquarters at P.O. Box 196 Libertyville, IL 60048-0196.